Genetics

Well, there are absolutely no incidents of cancer in my family, kidney or other kinds, except for a remote great aunt from a long way back. Other than her, no one ever had cancer yet here I am. So I don't know if there are genetic factors for some people but clearly there aren't for others.

I heard an expert speak about this at one of the KCA sponsored events a few months ago. She said that 90% of kidney cancer is not hereditary, and something like 10% has some hereditary components (and some small part is completely hereditary). They know quite a bit about this. She'd said if you don't have any kidney cancer that you know of in your family, then probably yours is not inherited. However, they can do genetic testing if you're not sure and want to know if your children are at risk.

I've considered doing this, because I'm adopted on my father's side, and because my mother's father died young and we don't have history on that branch of the family, so a good 3/4 of my family history isn't available. I'm still thinking about it. The testing isn't particularly expensive. I'm not sure if it's covered by insurance or not.

Todd

todd121 said:

Genetic Kidney Cancer

I heard an expert speak about this at one of the KCA sponsored events a few months ago. She said that 90% of kidney cancer is not hereditary, and something like 10% has some hereditary components (and some small part is completely hereditary). They know quite a bit about this. She'd said if you don't have any kidney cancer that you know of in your family, then probably yours is not inherited. However, they can do genetic testing if you're not sure and want to know if your children are at risk.

I've considered doing this, because I'm adopted on my father's side, and because my mother's father died young and we don't have history on that branch of the family, so a good 3/4 of my family history isn't available. I'm still thinking about it. The testing isn't particularly expensive. I'm not sure if it's covered by insurance or not.

Todd

The thing about genetics and kidney cancer, is they don't know all the causitive genes. My cancer is most certainly genetic (according to Dr. Linehan at NIH), as my father and grandfather had it.  But, the causitive genes have not been identified:  I do not have VHL or any of the other known syndrom.  I am BRCA1 positive.  So, they my genes and my fathers genes, and compare my genome to other cancer patients, and see if there are patterns....

In Iceland, where they have much better family records and a more agressive national health care system (with no HIPAA).  Using the database, they found that 60% of icelander with RCC had a first or second degree relative with RCC. http://onlinelibrary.wiley.com/doi/10.1002/ijc.10513/full.  So, that strongly suggest some type of geneetic link.

The way it was explained to me at NIH is it may be a combination of genetics that allow us to be predisposed for the cancer; if it is multiple genes then it becomes harder to identify the causitive gene.

dhs1963 said:

There is only a few experts in this field....

The thing about genetics and kidney cancer, is they don't know all the causitive genes. My cancer is most certainly genetic (according to Dr. Linehan at NIH), as my father and grandfather had it.  But, the causitive genes have not been identified:  I do not have VHL or any of the other known syndrom.  I am BRCA1 positive.  So, they my genes and my fathers genes, and compare my genome to other cancer patients, and see if there are patterns....

In Iceland, where they have much better family records and a more agressive national health care system (with no HIPAA).  Using the database, they found that 60% of icelander with RCC had a first or second degree relative with RCC. http://onlinelibrary.wiley.com/doi/10.1002/ijc.10513/full.  So, that strongly suggest some type of geneetic link.

The way it was explained to me at NIH is it may be a combination of genetics that allow us to be predisposed for the cancer; if it is multiple genes then it becomes harder to identify the causitive gene.

A related issue, there have been several different types of kidney cancer identified and each is quite different from the others. That alone adds quite some complexity to the issue of genetics and kidney cancer. I believe the expert I heard speak was talking about clear cell RCC. Some other, more rare types have much higher genetic components from what she was saying.

I got the idea from her talk, that they could do tests to see if it was likely an inherited genetic abnormality versus a genetic abnormality that was induced after birth (from the environment, for example), but like you said dhs, it is probably only for the genes they've identified so far, and that list is not exhaustive. She said that testing might give some insight as to whether children should be monitored more closely, but for clear cell RCC she did say that most  of it was not caused by inherited genetic abnormalities and most people with ccRCC don't need to be tested for that. How she could say that definitely? I don't know.

Todd

todd121 said:

Kidney Cancer is Not Only 1 Cancer

A related issue, there have been several different types of kidney cancer identified and each is quite different from the others. That alone adds quite some complexity to the issue of genetics and kidney cancer. I believe the expert I heard speak was talking about clear cell RCC. Some other, more rare types have much higher genetic components from what she was saying.

I got the idea from her talk, that they could do tests to see if it was likely an inherited genetic abnormality versus a genetic abnormality that was induced after birth (from the environment, for example), but like you said dhs, it is probably only for the genes they've identified so far, and that list is not exhaustive. She said that testing might give some insight as to whether children should be monitored more closely, but for clear cell RCC she did say that most  of it was not caused by inherited genetic abnormalities and most people with ccRCC don't need to be tested for that. How she could say that definitely? I don't know.

Todd

It would defintiely be interesting to see a full blown study of this.  In my previous post, I was referring specifically to a conversation about clear cell RCC that I had with my oncologist.  I agree with Fox, you wonder how much of the increased risk is due to environmental factors rather than genetics.  I.E.  second hand smoke, tainted water, diet, climate, etc. 

I'm a sucker for statistical analysis

Regardless of whether or not there is an increased risk, I know I will push my son to at least get an ultrasound every once in a while when he gets older. 

Better safe than sorry. 

dhs1963 said:

It depends....

If you are the only one in your family that has had kidney cancer, then that may be true, particularly if you have other risk factors (smoking, chem exposure, motorcycles).  However, if more than one person in the family has RCC, then the odds change dramatically.  In my case, my father and grand father had it.  I talked to my Dr about it, and my concerns were dismissed.  About 5 years later, I got a CT for other purposes, and they found the tumor.

Genetically, I probably had a >10%  chance at that time (my guess).  Now, with my cancer, my daughter and sister have a significant chance, but with the genetic component unknown, we can't really assess the probablity.  If it is one gene, it is 50%, two genes, 25%, etc.

The lack of understanding of the role of genetics is frightening to me.  It would be interesting to match the genome of all RCC patients, and see what patterns emerge.  However that would probably cost more than $100,000,000, so it is not happening.

I would love for my daughter to have a test for the risk.  Instead, she will be scanned probably starting at 30....

Ah dhs, so motorcycles increase the risk of getting Cancer..? Really.?

todd121 said:

Genetics and Cancer Screening

The doctor I heard speak on this at the LA Kidney Cancer Association meeting was:

http://www.cedars-sinai.edu/Bios---Physician/A-G/Ora-Karp-Gordon-MD.aspx

Who is the director at:

http://www.cedars-sinai.edu/Patients/Programs-and-Services/Medical-Genetics-Institute/

In case anyone is interested. They have a screening program there at  Cedars Sinai that I've been considering getting tested (because I don't know most of my family history).

Todd

 

 

 

when I was in physical therapy school. We had a textbook that stated that the rehab potential of motorcyclists was poor because of the lifestyle they (we) lived. Can you believe that crap? Now maybe needing a new liver due to cirrhosis is expected....degenerate losers.

nsb748 said:

Motorcycles could be an

Motorcycles could be an environmental factor due to increased inhalation of fumes while on the road (from the bike, and from the surrounding cars).  Motorcyclists are also generally more mechanically inclined than the average population, so this would mean increased chance of contacting solvents, petroleum based products, and any number of other things that could be considered carcinogens. 

I'm guessing that your textbook was not referring to any of these things though. 

Yes there are a number of "us" bikers here... but if you read deeper it seems that some of us (not me) were found to have tumors when crashing then being scanned in the E.R.   Now this all sounds odd, but the guys that had those scans typically had their Cancer found very early, as there were no symptoms yet.  Kind of a paradox to say that a bike crash saved their lives.. but it has happened.   In my case I had a crash in 2000 but they never found the small growth at that time...  I would be in a much better position had they found it back then... IF it was there... dunno...

On the fumes, that could increase the risk, but that would take a study.. not sure how that would ever happen.   But chemicals, gas on the hands, etc definitely increase Cancer risk to some degree... same with other environment issues..  Heck everything we eat or do increases Cancer risk.. or so it seems...

So, here we all are... in one large group... but I think most of the bikers still ride to some degree... me, much less than I used to.. booo...

Ron

Txgrl said:

I have been having ultrasounds every 2 years. The last one I had said I had a renal simple cyst. Dr told me it was harmless. A lot of people have them. I am curious if it has anything to do with RCC since my dad has it. Dr tells me no connection. Hard for me to trust drs when they stopped checking my dad after 5 years. He would be in better shape if he would have been scanned regular.

I only settled for the ultrasound this year with my new urologist because i had an abdominal ct scan for something else just 3 months earlier and everything was ok at that time.  So I told doc next year would be ct scan time.  I do not personally trust ultrasound.

Txgrl said:

Have you had a bad experience

Have you had a bad experience with Ultrasound? My dr is against CT scans. She tells me they can give you cancer. She told me not to worry about my simple renal cyst. She told me since i was so paranoid she would refer me to a urologist so they can tell me its nothing to worry about. I am concerned since my dad had RCC. Better safe than sorry.

US has less resolution than CT scans, so small masses can easily be missed.  There is a tradeoff, though.  The radiation from a CT scan is a possible hazard.  For those of us with diagnosed cancer, the hazard of the extra radiation is much less than the likelyhook of missed tumors from ultrasound.  Plus ultrasound usually focuses on a specific organ.

For me, I get a CT of the chest and an MRI of the abdomen and pelvis -- because my kidneys can not handle the CT contrast.

The genetic specialists at NIH Urological Cancer group suggest that a Ultrasound is not sufficent for screening.